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Hi Folks. Most of you may not be familiar with Sjogren's (pronounced SHO-GRINS) Syndrome. It is an autoimmune disease which causes all of the moisture-producing glands to not produce. Thus, I have severe dry eye; dry nose & dry mouth (also sinuses) without any cpap machine. I was recently diagnosed with SA & am struggling to find a solution that does not cause worse dry mouth.
I have a mask with nose pillows & do not sleep with my mouth open. I am getting so dry that I wake up with a horrible migraine-like sinus headache every day. This is the second mask that I have had.
I had heard that Sjogren's patients sometimes do better with a Bi-pap machine, but do not have a clue. I want this to work..but not waking up like this every day. When I turn the humidifier up, I wake up with water in my nose & the tubing bubbling.
Are there any of you with excessive dryness that have found a workable solution. Or maybe I have the wrong settings. No one has given me any ideas on different settings that I might try. For instance...if you have ___problem, try A: Or with _problem, try B.
I saw the SA doc one time and then received a letter he was leaving the practice. I am trying to get in with another one. But in the meantime, I am getting very little quality sleep and bad headaches.
Any thoughts? Thanks in advance. SjoDry
Dan, I am in the process (had a home sleep study) and will be having a follow-up lab sleep study soon, and obtaining a mask.
I have Sjogren's Syndrome. I don't know how familiar you are with Sjogren's (pronounced SHO-GRINS). It is an autoimmune condition that greatly affects the moisture-producing glands in the body.
Sjogren's patients have severely dry eyes, nose & mouth, etc. I have read that a CPAP Mask offers continuous air flow & can therefore, dry out a person's mouth. This would be horrible for Sjogren's sufferers. I was told that a Bi-Pap mask would likely be the better choice.
Also, I spoke to one woman (a Sjogren's patient) who mentioned that she had a mask that (perhaps the seal was improper) allowed air flow to dry out her eyes.
Personally, (since I am in research mode), I would like to see information that addresses mask considerations for the Sjogren's patient (and/or others with severe dryness issues) that could be impacted by mask choice.
It would be nice to see inclusion of such information on your site.
Thanks so much. Sandy Burkett Sjogren's Syndrome Patient/Support Group Leader & Ambassador for the Sjogren's Syndrome Foundation
